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 Table of Contents  
INVITED ARTICLE
Year : 2021  |  Volume : 8  |  Issue : 1  |  Page : 9-13

Challenge and response: Cleft care in an unprecedented pandemic


Smile Train, New Delhi, India

Date of Submission14-Dec-2020
Date of Acceptance16-Dec-2020
Date of Web Publication13-Jan-2021

Correspondence Address:
Dr. Mamta Carroll
Smile Train, New Delhi
India
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/jclpca.jclpca_48_20

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How to cite this article:
Carroll M. Challenge and response: Cleft care in an unprecedented pandemic. J Cleft Lip Palate Craniofac Anomal 2021;8:9-13

How to cite this URL:
Carroll M. Challenge and response: Cleft care in an unprecedented pandemic. J Cleft Lip Palate Craniofac Anomal [serial online] 2021 [cited 2021 Apr 11];8:9-13. Available from: https://www.jclpca.org/text.asp?2021/8/1/9/306781



The coronavirus disease 2019 (COVID-19) pandemic is the latest episode in a string of environment-borne human tragedies, catastrophic in its magnitude, reach, and repercussions. It has wrought unprecedented, perhaps unimaginable destruction, which has forced change on a global scale which in turn has forever altered several aspects of life.

The larger impact that the COVID-19 pandemic has had on all walks of life is difficult to quantify or contextualize, but it is clear that this global crisis is already reversing decades of gains and progress made toward poverty alleviation and access to universal health care and education. The immense impact on public health, education, businesses, and livelihoods, apart from the economic and social disruption caused, has been devastating. This is especially true for the development sector, with up to 150 million people at risk of falling into extreme poverty by 2021, while the number of undernourished people, currently estimated at nearly 690 million, could increase by up to 132 million in the year 2021.[1],[2]

The impact on maternal and child health has been detrimental with reduced institutional births, low access to quality care, increased chances of maternal and child mortality, disruptions in immunization/vaccination of infants, and poor access to maternal and child health services due to diversion of resources to COVID-19. The postponement and slow resumption of nonurgent surgical procedures to redeploy health-care resources for the massive medical needs of patients with COVID-19 has led to the delay of medically necessary, time-sensitive procedures.

Since Smile Train's operations fall under the health-care sector, it goes without saying that cleft care also bore the brunt of this pandemic. As per the United Nations, an estimated 20.1 million babies were born in India between March and December 2020. This translates to 28,500 + new babies with clefts since March 2020. They join thousands of children waiting for their life-transforming cleft surgery. This has led to a huge backlog of cleft surgeries.[3]

As the first and largest cleft-focused global nongovernmental organization with a sustainable model, our utmost priority is to support safe surgeries to the children born with cleft lip and palate, so our partner hospitals had to postpone surgeries to a safer time during the initial stages of the lockdown to cater to the needs of COVID-19 patients as well as to comply with safety protocols issued by the government. While the medical community understands the importance of this move, it is difficult to convince the parents of children born with clefts who are anxious about the health and well-being of their children. Keeping in view the prevailing situations, Smile Train decided to set up support systems through digital channels not only for these patients or parents but also for our partner doctors and outreach workers so that they could continue to do their duties in these times.

Smile Train's Toll-Free National Cleft Helpline 18001038301 was kept fully functional despite the offices being shut during the lockdown. On March 20, while most of our team was already working from home, our toll-free cleft helpline was still being operated from the office premises. However, our team anticipated that the government may soon announce restricted movement to contain COVID-19 transmission and displayed exemplary teamwork that led to the setting up of a mechanism for the helpline officer to continue taking calls from her home [Figure 1]. The cleft helpline became a support system for cleft patients during the pandemic to answer queries of parents ranging from how to feed a newborn with cleft lip and palate, when would they be able to seek free cleft treatment for their child, to a young mother calling in after she was abandoned by her family because of her daughter was born with a cleft lip. However, just a few words of reassurance that their baby would receive free treatment and care at the closest Smile Train center in the near future gave these parents hope. Stories like these reached us from all corners of India during the lockdown, reaffirming our belief that the way forward for Smile Train India involved catalyzing the use of technology for day-to-day activities to continue supporting smiles for children born with clefts in the “new normal.”
Figure 1: Toll-Free National Cleft Helpline

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It is estimated that, for as little as $250 committed toward one cleft repair surgery in developing countries, the return on investment can be 150 times as former cleft patients go on to contribute to economic productivity and lead full, productive lives in their communities.[4] One can imagine the economic fallout if cleft care is compromised for too long due to the global pandemic. Since we began our India operations in 2000, Smile Train has created a legacy of 625,000+ cleft surgeries supported at 150+ hospitals [Figure 2]. We have one goal when it comes to the single, solvable problem of cleft lip and/or palate, and that is to give every child with a cleft the opportunity for a full and healthy life. We have always leveraged technology to support our operations, so pivoting our programs during this pandemic was a challenge that we were well equipped to overcome. We followed a systematic approach to cleft care during the pandemic, which involved:
Figure 2: Partner Hospital Cleft Team

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  • Smile Train India's Medical Advisory Council laying the groundwork for developing safe surgery guidelines for cleft care during the pandemic. Conducting multiple webinars to brainstorm and share knowledge about various aspects of comprehensive cleft care with our teams in different locations [Figure 3]
  • Smile Train provided COVID-19 testing and PPE support to partner hospitals to ensure safety of both our patients and medical partners. Safety equipment support such as anesthesia workstations, ETCO2 monitors, ventilators, and pulse oximeters has also been supported as per the hospitals' requirements
  • Training Support: Ten webinars were conducted by Indian cleft experts, which benefitted 1000 + cleft medical partners from 16 countries. These included diverse topics such as VPD assessment and management, nutrition, orthodontics, and tele-speech therapy [Figure 4]
  • Patient support: Regular online and tele-counseling to the parents of children with clefts were supported by our partner hospitals throughout the pandemic. This was complemented by Smile Train's toll-free cleft helpline, providing a direct link with patients and caregivers [Figure 5].
Figure 3: Lockdown Knowledge Initiatives by Leveraging Technology

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Figure 4: Webinars For Partner Medical Professionals From 16 Countries

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Figure 5: Tele Counselling By Partner Doctors

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By following this approach, Smile Train India has conducted 12,000+ safe cleft surgeries since March 2020, while ensuring strict adherence to global and national safety guidelines and following our comprehensive COVID-19 safety protocol to resume surgeries only where it was safe to do so [Figure 6].
Figure 6: Smiles During The Pandemic

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As an organization, Smile Train believes that safe surgical and anesthesia care is not a luxury it's a human right. For 20 years, we have worked to empower local medical professionals to increase access to surgical care. Smile Train is committed to advance cleft patients' rights to safe, affordable, and timely surgical care within their own community. Keeping in mind these fundamental principles, we recently announced two strategic global initiatives for a safe surgery and anesthesia care [Figure 7].
Figure 7: Safe Surgical And Anesthesia Care - A Human Right

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Smile Train took on operations of Simulare Medical, a leading developer of surgical simulators, and this initiative will provide Smile Train partners with greater access to safe, high-quality training, particularly in regions with limited resources. Smile Train will incorporate the simulators into its portfolio of training programs around the world, making cleft surgery both safer and less costly, as according to research in Plastic and Reconstructive Surgery, simulator training tools have been shown to improve trainee's grasp of key concepts and shorten the learning curve. The 3D-printed simulators are the most anatomically correct in the industry, offering surgeons training through hyperrealistic models to help prepare them for the many nuances of properly treating cleft lip and palate.[5]

We also launched the Smile Train-Lifebox Safe Surgery and Anesthesia Initiative, a multi-year partnership to elevate the quality and safety of cleft and pediatric surgery globally. This initiative will develop cost-effective technical innovations, invest in critical education and training for health workers, and carry out related research – all essential components of safe surgical and anesthesia care. Ultimately, the partnership will reach more than 1100 hospitals in seventy countries, elevating the standard of care for pediatric surgical patients around the globe and will impact more than 2.6 million surgical patients worldwide.

At Smile Train, we believe that learning is a lifelong process that must never stop under any circumstances. To retain and reinforce the momentum going for upskilling the next generation of cleft care professionals, we announced a collaboration in September 2019 with the Federation of Obstetric and Gynaecological Societies of India (FOGSI), India's largest association of gynecologists and obstetricians, to drive early diagnosis and intervention for children with clefts, as early as the fetal stage by educating health-care professionals. This partnership with FOGSI aims to create more awareness and eliminate myths surrounding clefts so that parents of children with clefts are well informed and bring forward their children for treatment at an early stage. In addition, Smile Train and FOGSI will work together to create and share a Standard Medical Protocol for cleft lip and palate accessible by the entire Obstetric and Gynecological community, which will be released in January 2021.

This year, a key challenge was reaching target communities such as new and expecting parents in times of social distancing, but we found a solution by partnering with BabyChakra, BabyCenter, and Sheroes, which are community platforms that helped us reach a wide audience to spread the word about our cause. Through “Question and Answer” sessions hosted on these platforms, our partner surgeons answered all possible questions about clefts that new and expecting parents had. We plan to continue with this online community outreach program in the upcoming year as well.

Social media and digital channels have played a huge role in bridging the distance between all of us while we stayed home to stay safe from COVID-19, and we were lucky to have our celebrity Goodwill Ambassadors support us through these channels. During the lockdown, Smile Train India stepped up to raise our voice against the stigma associated with COVID-19 through our #EndTheStigma campaign, and our partner doctors and longtime supporters such as cricketer Harbhajan Singh, Padma Shri Paralympian Deepa Malik, and LIVA Miss Diva Universe Adline Castelino helped us carry the message. All these efforts bore fruit, and stories of transformation, learning, and smiles pouring in from all directions have strengthened our resolve of building a resilient cleft care ecosystem in the postpandemic world. During the National Cleft and Craniofacial Awareness and Prevention Month in July 2020, our cause was supported through unique ways such as fundraising using art, sharing of personal journeys, and motivational messages of how former cleft patients achieved success and fulfillment after receiving cleft care.

Our cleft fellowships for training new surgeons have also seen tremendous success, with more well-trained partners joining our existing team to spread smiles on the faces of children born with clefts. Our partner hospitals keep sharing updates about new milestones achieved ever so often, even in these times, and such news inspires us to carry on with a renewed vigor.

We cannot talk about the pandemic without remembering the pillars of Smile Train India program who were cruelly taken from us in 2020. Mr. Satish Kalra, who started Smile Train India from his home office in 2000 and built what has become our largest Smile Train program having helped 500,000 + cleft children in India. We mourn the loss of Smile Makers Dr. Hirji Adenwalla, Dr. Jyotsna Murthy, and Dr. N. Panchavarnam, who have been with Smile Train from the start and the legacy left behind by them remains alive through the strong programs which continue to support safe cleft care for children [Figure 8],[Figure 9],[Figure 10],[Figure 11].
Figure 8: Mr. Satish Kalra

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Figure 9: Dr. Hirjee Adenwalla

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Figure 10: Dr. Jyotsna Murthy

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Figure 11: Dr. N. Panchavarnam

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We bid adieu to 2020, a year that taught us so much, and welcome 2021 with the hope and conviction that comprehensive cleft care can and must continue so that our dream of supporting 1 million smiles in India becomes a reality.



 
  References Top

1.
2.
3.
4.
Available from: https://gh.bmj.com/content/1/4/e000059. [Last accessed on 2020 Dec12].  Back to cited text no. 4
    
5.
Available from: https://pubmed.ncbi.nlm.nih.gov?/29280875/. [Last accessed on 2020 Dec12].  Back to cited text no. 5
    


    Figures

  [Figure 1], [Figure 2], [Figure 3], [Figure 4], [Figure 5], [Figure 6], [Figure 7], [Figure 8], [Figure 9], [Figure 10], [Figure 11]



 

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